Discussions By Condition: Nerve conditions

What are others' experiences with Complex Migraine or Complicated Migraine?

Why is it called Complex Migraine (CM)?Personally, the only reason I can see why it is called CM is because the mechanism of action for “regular” and complex migraines is theorized to be the same. I am not an M.D., but basically, one of the nerves in your brain goes catawampus, and this triggers a reaction in one of your nerve or nerves that causes migraine (headache/pain) or complex migraine (stroke-like) symptoms. The theory is there can be certain triggers, such as stress or even types of foods, that causes this nerve or area to spasm, but sometimes there appears to be no trigger. I’ve seen some sites claim regular migraines and CMs are variations of the same animal, so to speak, and to be treated similarly. However, as far as non-M.D. me is concerned, “regular” migraines and complex migraines are two different animals. They may be living in the same cage, but they are still two different animals. That is simply my personal opinion.

But, maybe I’m just ticked, because if headache and migraine professionals continue to act like they are mere variations of one in the same, then I’m pretty much screwed along with some other CM'ers. From my look-see, about 90% of the conversation with these professional sites and organizations revolve around headache and pain--none of which really applies to me. CM sufferers deserve their own stake. They deserve their own professional sites and/or organizations in and of themselves. And, it is my personal opinion that anyone with CMs should be seeing a specialist. CMs are not only that complicated, but as one headline implies, “Dangerous, complex migraines linked to high risk for stroke.” Although, this proclamation is not without its controversy.

What is living with Complicated Migraines like? Or, what happened at age 47?Here I was merrily going along with my life, when at age 47 I woke up in the middle of the night, got up to use the restroom, and bam! I could not feel anything or really move anything on my left side. I quickly slumped to the floor and laid there for about a minute or so trying to get reoriented. I tried again, and this time I was able to move my left side, got up, went to the bathroom, then went back to bed. I was still kind’a dazed. In the a.m., I was feeling dizzy, and thought, “oh!, oh!,” maybe I better go in. Stupidly (and I do mean stupidly), I tried to get in to see my eye doctor initially, because a week or two prior, I had been having unusual eye symptoms, such as narrowing of vision, inability to focus, etc. Unfortunately, my eye doctor was out on vacation, and his clinic partner refused (yes, refused) to see me; so, I wasted valuable weeks of time before I got in to see my eye doctor, who immediately referred me to my primary physician and an ophthalmologist.

My primary physician ran some blood work, ordered an MRI, and all came out well—no evidence of a stroke was apparent nor much else. The only thing she could find was slightly elevated blood pressure. When the dizziness, numbness and unusual eye symptoms would not go away, my primary physician did the best thing she could; she referred me to a neurologist. Following up with the ophthalmologist did reveal a slight peripheral vision loss in my left eye (due to ?) but it did not reveal anything else. When I finally did meet with my neurologist weeks later, he listened in detail as I explained my ordeal and symptoms to him. After a brief neurological exam, he mentioned “Complicated Migraines” for the first time. He explained to me what these were (see above), asked if I knew whether or not I was going through menopause, what my family and personal history was with migraines (answer: none), and a few other questions. After his visit, I did see an endocrinologist who confirmed I was indeed in full-blown menopause (I had a hysterectomy years earlier, so I had no idea), and she also diagnosed a Vitamin D deficiency. My neurologist wanted to run a couple of other tests, and when these came back negative, he confirmed the CM diagnosis and started me on Propranolol, which I was thrilled about, as this one medicine treats both high blood pressure and is prophylactic for CMs. It did take a while to get the dosing right, though.

Something that has never gone away, however, is my extreme sensitivity to light/glare. It got so bad at one point, that I had to wear sunglasses at work. I work for a medical organization, but believe me, not even these people had much sensitivity for someone going around wearing sunglasses, despite the fact that I tried to keep this to a minimum. Comments such as, “Are you trying to be a movie star?,” were not that unusual. I didn’t want to wear sunglasses all day at my desk, so I thought I would be able to simply submit a lighting work-accommodation request and my work would happily reduce the lighting around my desk. Well, this wound up being an absolute nightmare! We were leasing the building, and the building owner refused to adjust the overhead lighting because “it would create a lack of consistency.” Believe me, I did not take that sitting down. I went on to raise a ruckus that almost got me fired, I think. But, after getting two letters from physicians who stated that modified lighting would assist me and having to be subjected to an independent evaluation, I got my lighting changed. I included this story, because it is but one example of what a CM’er had to go through just to get what you’d think would be a simple work-accommodation.

But, putting this aside, things were finally stable for a year or two since the time I officially got diagnosed and on a treatment regimen that worked. I had several bouts or episodes, but I muddled through them, and I even dared to think that maybe I was going to outgrow these CMs, maybe my hormones have stabilized, etc., and they’d go away soon. But, alas, this was not to be. A short while ago (a full five-years after my first episode), I finally wound up in the ER. I woke up on a Tuesday around 2:00 a.m. with a very bad left-leg cramp. I straightened my leg, got up, walked around, and it seemed to be better, although when I got up for work, it was still a little painful. But, being used to weirdy things going on, as usual I just muddled through it. However, that Saturday, I woke up again at night with an excruciating left-leg cramp. This time it was much worse, and I felt a definite numbness on my left side, particularly around my face. After a short while, I was able to go back to sleep. Later I got up and just wasn’t feeling right. It was so definitive that my entire left side was numb, and the left side of my face felt like it had been punched, and the left thigh pain was just not going away. Finally, I decided to have my husband take me into the ER.

When I got there, I suspected my vitals were going to be stable, and they were. This is one of those real conundrums with CMs. You are having stroke-like symptoms with them. BUT, how do know when you are really having a stroke or not!? You simply don’t. I made the decision to go to the ER with this bout, because I had a new symptom—left-leg thigh pain—but is that a good way to do it or not? I don’t know. I did tell the ER doctor my history of CMs. I hate to say it, but he got kind’a blow-offy right away. The ER was not busy. I project he figured since my vitals were stable, I was perhaps just using up his time; I don’t know. But, really, what do you go by? Anyway, they wound up taking a 5 min. ultrasound of my thigh, and when that came out negative, sent me out the door with some pain medication. (When I followed up with my neurologist, he just about had a fit—could not believe they didn’t take matters more seriously, as they easily could have been.) Not sure what you can gleam from this story, but perhaps you can get a feel for how on a continual basis CM’ers have to struggle with:Is this just my Complex Migraine, a new exacerbation, or am I actually having a stroke!?To me, this is one of the biggest issues those with CMs face, and it is scantily addressed. Maybe if CM’ers had their own professional sites and organizations, it would be? All I can say is, right now I’m not really looking forward to having to go into the ER again, and risk getting that look that seems to imply I’m a A) nut-case, B) looking for freebie drug handouts, or C) suffering from Munchausen‘s.

A last word or two. . . .I have to say something here about depression. I know there is a theory that depression can cause CMs. This may indeed be the case. But, in my non-M.D. opinion, it is more likely that depression can be a consequence of CM. Case in point, if you had to endure multiple week long episodes of dizziness; numbness on the left side of your body, particularly on the left side of your face; your left eye feeling like it is ready to fall off; and leg pain shooting up and down your left thigh, all the while trying to act as normally as possible, because you have long since figured out that there are not a lot of people out there who have empathy for something they themselves cannot see, you might get depressed after a while too.

Not the best way to end, but I still consider myself more fortunate than a lot of CM’ers. What do others who have to deal with complex or complicated migraines think?

2 Replies:

I would swear I was reading my own history! I just started having CM's in August. Driving home from Oklahoma to Indiana thru St. Louis, my left arm became extremely weak and my head was hurting slightly and I just didn't feel well. Long story, my husband finally took me to the ER there because he thought I was having a stroke and they even diagnosed me as having a TIA after two days of testing. I followed up with a neurologist who did an MRI and diagnosed the CM. I have had regular migraines since my 20's but haven't had any for a couple of years so this just came out of the blue! The neurologist started me on a new blood pressure patch first because my blood pressure was so high but that didn't work. I kept having them every night and throughout the day. Same symptoms as you described, numbness in the face and weakness in the arms and sometimes complete loss of use in one side of arms and leg. My husband says I will get up in the night with one and be totally confused and my speech slurred and I have passed out, all kinds of crazy things.In September and October they got a little better but now they have started up even worse. I am having them every night again. And the funny thing is that as soon as we turn out the lights we notice the headaches and symptoms begin! Last night we turned the lights back on and waited, the symptoms eventually got better and I fell asleep. About 2:00 a.m. I woke up and turned off the lights and of course the headache started up! Has anyone experienced this?? I feel like I must be crazy because you normally seek out a dark room with a migraine! We had noticed that as soon as I went to bed the headache was starting up, it just doesn't make sense. I guess that's why they are so complicated. I take Topamax 100 mg 2x a day. Not crazy about that at all but I m not really having any trouble with it to speak of. Tankful for the forum! Just joined today!

I just started having similar symptoms. Mine started when driving with blurry vision. Then left eye ticking. In 10 min ticking severe & mouth drawing to left..painful. went to ER 12 min away with confusion, couldn't smile, wiggle tongue, barely talk. Right side numbness like dentist gave me shot. No strength right side. Last 3 fingers right hand drawn for over week. Say no stroke & may be CM but not sure. Been running fevers no reason 3 years. Test after test...no answers. Is depressing!